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March 14, 2019

Navigating end-of-life care

Caregiving Death

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It is natural for a person to struggle with something outside their control. Most situations in life are navigable with one exception: its end. No matter the underlying cause, supporting a loved one in palliative, hospice, or other end-of-life care is emotionally trying.

When a patient moves to end-of-life care, family members are often tasked with managing challenging conversations around death and dying. Since these topics are often avoided in conversation, patients struggle to honestly and clearly communicate their thoughts and feelings related to their care preferences — meaning family members can find it difficult to follow their wishes, communicate with caregivers, or inform others.

Fortunately, there are resources available to help families navigate these final stages of a person’s life.

Experts suggest family members and loved ones first try to subdue their need for any kind of predetermined road map or plan. There is no uniform formula for such a deeply personal experience, and the expectation for one will only lead to anxiety and tension. Once people shed this underlying need to control the uncontrollable, they can then turn their focus to what will best benefit the patient.

How to face the reality

Difficult as it may be, patients and family members alike are encouraged to face the reality of care head-on. Being forthright and direct creates less ambiguity with the patient and gives family members precious additional time with their loved one. Families and patients should maintain clear, open lines of communication — even when those conversations feel uncomfortable.

It may be beneficial to hire a professional health care agent to help, especially if the patient needs someone to speak on their behalf, or is unable to make informed medical decisions. Paul Malley, president of Aging With Dignity, suggests maintaining these dialogues both verbally and in writing to reduce the opportunity for muddled communication, acknowledging the tendency families have for playing “telephone” as information travels.

Allowing independence when possible

It is also important to understand each person’s desire for autonomy, regardless of where they are in their end of life journey. For someone dealing with significant medical issues, it may feel as though they no longer have agency over their own decisions. The basic choices a person used to make day-to-day may not be available during end-of-life care. For this reason, it is recommended that an advanced directive and living will be completed with an attorney before care begins. An advanced directive states what the person wants done in the event that they are no longer able to communicate decisions. A healthcare power of attorney can also be completed in advance. This legal document’s purpose is to appoint a trusted person who has access to medical records and can make decisions on someone’s behalf.

While advance care planning is helpful during end-of-life care, the final stages of a person’s life and the ability to no longer communicate can still be difficult to cope with personally. To ease the discomfort that comes with this lack of independence, families and loved ones should remember to give the individual choices when appropriate. For example, a family member could ask, “I’d like to talk to you about what the doctor said earlier. Is that okay?” These questions should not be patronizing but should instead acknowledge the patient’s desire for self-sufficiency and emphasize a deep respect for their wishes.

For families navigating end-of-life care and patients in palliative or hospice care alike, the best advice is to be an active learner and listener.

End of life is uncharted territory for every person. The only way to be prepared for life’s eventual conclusion is to ensure there is an open dialogue between all parties involved, and that to keep it open through the end of care.

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